CLL Support Association
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Another week's delay

My other half started FCR 7 weeks ago, first course went without hiccup. Platelet levels initially spiked, but now steadily dropping (82 before treatment, then weekly readings of 73, 99, 103, 76, 67 and now 63). Lymphocytes way down (now 1.36 against 35.9 before treatment).

Treatment now being delayed for a 3rd week - how long is this likely to go on? And what could be the cause of the dropping platelet levels?

Biggest change to pre treatment routine is less exercise - we would normally do a cycle ride of 35-50km once or twice per week, but he's lacking energy, so dog walking and pootling around at the moment.

He was asymptomatic beforehand, we finished a ski season (approx 120 days on skis as instructors) where, other than getting to bed a lot earlier than before, he was fine, so now wondering why on earth he started the treatment. This was done on the advice of both the local haematologist and a CLL specialist.

2 Replies

What your other half is now experiencing is exactly why he started treatment when he did - platelets falling consistently below 100 is one of the triggers for starting CLL treatment. That's because treatment impacts the bone marrow's ability to make blood cells, with platelet levels particularly vulnerable, because platelets only have a short lifetime in the blood - about a week.

You've done well asking for a second opinion from a CLL expert, who backed up your local haematologist's recommendation, so be reassured that what your other half is experiencing is typical. At the moment his bone marrow is still heavily infiltrated by CLL (which caused the drop in platelet production) and is being hit by the FCR bone marrow toxicity. Because he started when he did, he is unlikely to need platelet transfusions, which only last a few days in any case.

Be reassured by the dramatic improvement in his blood lymphocyte count, but be patient for his bone marrow to be cleared out - that's why 6 cycles are often needed. His fitness should stand him in good stead - it's well recognised that fit people handle chemotherapy treatment better than those that are less fit, particularly if they keep exercising during treatment.



Thank you so much.

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